Carcinoid-NeuroEndocrine Tumour Society-Canada (CNETS Canada)

The Carcinoid-Neuroendocrine Tumour Society Canada (CNETS Canada) is a Canadian charity established in 2008.

The first two projects were presented at our 2012 Ottawa International Conference for Medical Professionals and Patients.

We have a cross-Canada Board of Directors of 10, including medical professionals, and a membership of 20 support group leaders or members who run face-to-face support groups.

Our Mission

Building towards a cure for neuroendocrine tumours (CNETs) and cancers through research, education, awareness and support.

Our Vision

Raising the awareness of neuroendocrine tumours among patients, the general public, and the medical and the research communities by providing well-informed support on management and treatment options to all those involved with NETs; and by supporting NET-directed research and better clinical management practices that will achieve an ultimate goal of early accurate diagnosis and best possible treatment for NET patients.

Research

We have two research initiatives underway in partnership with the Cancer Research Society, www.src-crs.ca and will shortly announce a third.

Education

We have produced DVDs of eight patient-physician conferences since 2007. Our cross-Canada support groups offer support and information about our cancer including how to get a referral to a neuroendocrine site team. We learn about treatments in Canada as well as about best practices worldwide. Our Ottawa Conference was a great success and the program reflecting everything that patents think about is attached.

Awareness and Support

Our cancer experiences extreme invisibility. We are nameless on almost all cancer lists, except for the Cancer Research Society which lists us as Neuroendocrine Cancer. We are found under “other endocrine” in the Canadian Cancer Encyclopedia and under “Gastro Intestinal” in hospitals. Neither term is adequate. We do our best to get as much media exposure as possible. Steve Jobs had our cancer, but millions thought he had a different cancer.

Our next steps are to create a Patient Handbook and a Scientific Advisory Board.

We estimate there are between 12,000 and 15,000 CNETS patients in Canada. We do best when diagnosed and treated by neuroendocrine cancer site teams. Neuroendocrine cancer site teams with a complete range of diagnostic and clinical options exist in Ontario, Alberta, and Quebec. There are inter-provincial understandings that allow patients from a province which has an incomplete range of options to be treated out-of-province.

Our Action Plan describes neuroendocrine tumours or neuroendocrine neoplasm, which is a newer term in the following way: Neuroendocrine neoplasms (still most commonly known as NETs, or neuroendocrine tumours) were previously misunderstood as “carcinoid tumours” only. These relatively rare neoplasms originate from the diffuse neuroendocrine system and occur most often in the bronchial, pancreatic, or gastrointestinal systems, with the gastrointestinal tract accounting for just over half of all cases. Neuroendocrine neoplasms (NENs) represent approximately one per cent of oncology cases.

Our tri-fold brochure, which we produce and distribute ourselves to hospitals across Canada, shares many facts. Here are some:

Carcinoid neuroendocrine Tumours (CNETs) often grow slowly over months and years but can occasionally grow quickly.

They can be silent for years. They often metastasize to the liver and sometimes to the bone before showing any symptoms.

From initial onset of symptoms, the average time to proper diagnosis exceeds five years.

They are often misdiagnosed because their symptoms often mimic more common conditions, like Irritable Bowel Syndrome or Crohn’s disease.

Diagnosis of this type of cancer is complex and often requires sophisticated laboratories and scanning techniques.

Important tests are the 5HIAA 24 hour urine test and the Chromogranin A, test which measure production of hormones specific to Carcinoid NET Cancers

NETS almost always become malignant (cancerous). Surgical removal of very small, localized tumors is the only curative therapy.

With timely treatment, these symptoms can be controlled and heart damage prevented.

Therein lies the true problem: patients are too often diagnosed when the damage has already occurred.